April 7, 2012

We want to wish all of our readers a very Happy Easter!!When Jesus was on the cross, He was thinking of how much He loves you & me!! He was willing to lay down His own life for each one of us!! What an incredible, loving Savior!!

 

April 4, 2012

We took Bradley to the Pediatric Orthopaedist at St. John's Hospital in Springfield, Illinois this week after the Neurologist at Cincinnati referred us for evaluation of Bradley's persistant right ankle pain and the bony abnormalties shown on X-ray. This group is also affilitated with Southern Illinois University-School of Pediatric Orthopaedics. The visit went well and we were very pleased with Dr. McGinty and her staff. She was very knowledgeable about Duchenne Muscular Dystrophy and really explained well what was going on in Bradley's ankle. She was very helpful.

Dr. McGinty believes strongly that Bradley has Avascular Necrosis of both ankles, but the right is worse than the left, most probably because he has suffered trauma in the right ankle with the sprain 2 years ago.  Avascular Necrosis means that bone death or breakdown is occurring as a result of lack of blood blood to the bones in the ankle. This is probably a result of long term steroid use. He has been on steroids for about 10 years for the treatment of his Duchenne Muscular Dystrophy.

 

In the ankle there is a talus bone. The top of this bone is called a talar dome because it is rounded or concave on top. His talar dome is almost flattened. The X-rays from Cincinnnati shows the tibia has shifted and is almost touching this flattened area of the talar dome. She did another X-ray of Bradley standing and bearing weight and it shows impingement is occurring when he walks. This means bone is rubbing on bone and this explains why he is having so much pain.  

 
The same process is occurring in the left ankle. He also has arthritis in his both ankles and feet. 

 
We have 2 options, surgery or non-surgical treatment. She recommends trying the non-surgical intervention first which is to add more heel to his right shoe. This would relieve the bone on bone pressure  that occurs when he walks. We purchased a pair of New Balance shoes and sent them to the Orthotist through the mail. She will also make Bradley's night splints ordered by Dr. Rybalsky from Cincinnati Children's Hospital.
 
Dr. Rybalsky wanted Bradley to have Serial casting to fix his heel cord Contractures if the ankle problem does not preclude him from it. Dr. McGinty did not recommend serial casting. It will actually be very painful and intolerable. We know this to be true since he hasn't been tolerating stretches very well in the right ankle. She told us to continue stretches but to use caution and not stretch beyond the point of pain. 

 

She also explained the surgical procedure, which would be very extensive and painful. Because he has Duchenne, he would need to be up walking the day after surgery to prevent loss of ambulation. There is a possible risk that he could lose ambulation or get weaker. 

 

She explained that the surgery would involve scoping out  and smoothing the bones. This would add more space between the bones that are rubbing together. She would also need to cut the tendon in the back of his ankle and add a tendon taken from the side of his foot to lengthen the heel cord. Hopefully, the higher heel in his shoe will help and we won't have to do surgery. 

 

However, on the way home, Bradley told us if he has to have surgery he will walk the day after surgery no matter how painful it is because he is not going to give up on walking. What a fighter!!

 

We are going to go back on May 4th, to see Dr. McGinty again and also to pick up the shoes and night splints from the Orthotist.

 

The ankle issue has been a long drawn out issue.  The first orthopedist we went to did not even look at the CD of the x-ray that I had sent to him. He said he has not received the CD even though I called the week before and was told it was there. He also told us there was nothing that could be done for bony abnormalties.

 

The second orthopedist didn't want to see him because he was a complicated medical case. That appointment was canceled the day before he was scheduled.

 

I guess the third was a charm, because Dr. McGinty was so knowledgeable about not only what was going on in the ankle, but also about Duchenne Muscular Dystrophy.

 

March 23, 2012

This has been a busy day. I worked until noon, but left a lot of work for myself to do on Monday since we had so many clients to see in the WIC office.

I had to take Bradley to the doctor since he has been coughing all week. The last three days have been worse and I suspected bronchitis. He did have the beginnings of bronchitis and a sinus infection, so she put him on an antibiotic. It's difficult sometimes to know when to go to the doctor when it comes to infections. In most cases, doctors like to wait at least 10 days to see if the infection is viral or bacterial, since antibioitics can make viral germs stronger. But when it comes to DMD, there is a risk for pneumonia and it is a good idea to treat infections prophylactically.

I tend to get a little worried when infections get into Bradley's chest. The really good thing is that Bradley has not been on an antibiotic since May, 2011. That was when he had his last bout of bronchitis. I am hoping he feels better soon. We are also treating him with promethazine/codiene, mucinex, and cough drops; as well as a vaporizer at night and plenty of fluids.

Bradley will be 15 years old on Tuesday, March 27th. We are going to have Bible study that night, but our refreshements will include a birthday cake.

On March 31st, we will be celebrating his birthday with relatives but it is going to be simple. I am going to serve ice cream, birthday cake, drinks, and snacks.

On the morning of March 31st, we will be participating in a MDA Walk in Cape Girardeau, Missouri. I think they have a lot of neat things on the schedule. I am thankful for the donations that people have made. If you would still like to make a donation, you can go to our team page here:

Also today, our appointment with the Orthopedist (Dr. McGinty) at SIU Pediatric Orthopaedics in Springfield, IL. was changed from April 6th to April 2nd. I'm glad to get in earlier but it would have been a work holiday for me on the 6th. I am anxious to have Bradley's Rt. ankle addressed. I am much more concerned about the ankle than I am about serial casting, but if she approves she would be able to do serial casting.

 

March 14, 2012

Well it turns out that we will be taking Bradley to Springfield for the pediatric orthopedic consult afterall. I just spoke to the Nurse there in Springfield and she has received the referral from Cincinnati Children's Hospital.So if the orthopedist feels that he can have serial casting, with what is going on with the right ankle (bony abnormalities and pain), we will just get it done there. This way we wouldn't have to worry about getting it arranged in Sikeston. I have a feeling they are going to say he shouldn't have serial casting because he is having such an issue with the ankle. Then again, serial casting could improve the situation. Tom will also be able to go with me, so I am thankful for that. Our appointment will be on April 6th at 10:30.

 

March 9, 2012

We are getting ready for another MDA Muscle Walk on March 31st. The event is going to be held at the West Park Mall in Cape Girardeau. I sent a few letters out to businesses who supported our walk last year. I was pleased to receive donations from Charlotte Clover (Our insurance agent), Dr. John Casper (our dentist), Dr. Connie High (my chiropractoro), Anna Jonesboro National Bank, and Southern Gas Company. Their support for the MDA is very much appreciated again this year.

 

Bradley will be celebrating his 15th Birthday on March 27th. I would like to do something special and fun this year, but I haven't come up with any ideas so far. I've been asking Bradley to think of something as well. As far as a birthday party, we are thinking of keeping it simple and inviting family for icecream and cake. 

 

March 1, 2012 

I was really saddened on Tuesday when I received a call from the orthopedist office. I was informed that the doctor, after looking at Bradley's progress notes did not want to see him and cancelled the appointment. The person on the phone said there was nothing he could do to help him and he did not feel comfortable even making any decisions on his ankle.

Later that night, I found a web page for the Clinical Center of Excellence-Pediatric Orthopaedics through SIU School of Medicine and learned that these pediatric orthopedist travel to places very close to our home. They are affilitated with SIU School of Medicine and The Division of Specialized Care for Children.

The next morning, I called to make an appointment and learned that the referring physician would have to send a referral before I could make an appointment. So I called Cincinnati and spoke to the doctor's nurse. She said they really wanted Bradley to come back to Cincinnati to see their orthopedist because they knew he would be on the same page and would be familiar with DMD.

Tom was very adament that we should be able to get his ankle evaluated locally. I called the nurse back and she is going to ask Dr. Rybalsky if she will be willing to refer Bradley to the pediatric Orthopedist that I had found. So I am waiting to hear back from Cincinnati by this coming Monday.

Yesterday, I decided since Division of Specialized Care for Children had worked with Bradley in the past that I would call and ask more questions. I found out that they are the ones who fly the doctors to these nearby areas from Springfield. She told me that part of it would be based on income and I found out we are over-income. But she said we could still see the orthopedists in Springfield. Springfield is about 2 1/2 hours away; not much more distant than St. Louis. Tom felt that we could still go to Springfield so I decided to stick with this. Hopefully things will work out.

This whole ankle issue and getting an "appropriate" orthopedic consult has been very stressful but I know in the end God will work all of this out in time. I just have to be patient.

Bradley is still having pain in the ankle and has been since the beginning of January. Tuesday night he said,  "Mom, I guess I'm just going to have to get used to it hurting all the time cause no one can do anything about it." I don't think an almost 15 year old boy should have to live with and get used to pain. It just doesn't seem right.

If things don't work out with this new route we are wanting to take, we are just hoping we can go to Cincinnati a little earlier than 6 months form the last visits. We are due back the first week in August. Maybe we could go around the end of May for example and then get back on the 6 month schedule.

It just seems too much to go for one appointment. It would be better to go when we can get several appointments done in one trip. So I can understand where Tom is coming from. At the same time, I understand how much better it would be to see an orthopedist who has DMD Experience also.

Please continue to keep us in your prayers. We appreciate that so much!

 

February 23, 2012

This has been a stressful week but things seem to be working out a little better now.

Stephanie and I took Bradley to the Orthopedic who did his serial casting 3 1/2 years ago. The main purpose of the visit was to have him check Bradley's right ankle because he has been having issues with pain the last 2 months. Also a recent X-Ray in Cincinnati showed an abnormality (Slight irrregularity and loss of concavity of the talor dome. The superior margin of the navicular is irregular. No visible fracture or other osseous abnormality. The ankle mortise is intact). He sprained this ankle 2 years ago. X-Rays were normal at that time. He was also supposed to determine if it would be a problem for the right ankle, if serial casting was done to correct assymetrical contractures of his heel cords.

I went to a lot of trouble to have a disc of X-Rays sent to this Orthopedist from Cincinnati. I called the week before Bradley's visit to make sure they had received the Disc and they said they had. I also went to the trouble of going to our local hospital and obtaining a disc of X-Rays taken when he sprained his ankle 2 years ago. I took this disc with me, thinking he could compare the new X-Rays with the old ones. I also took the radiology reports with me. When he came into the room, I asked him if he had reviewed the X-rays sent from Cincinnati and explained that the disc he had in his hand was of X-rays from 2 years ago when he sprained the ankle. He said it was the only CD he had. I told him that I had called and asked if the X-rays were there the week before. He said they were not there but he had the radiology report and that is all he needed. He then said, "Not much you can do about a bone abnormality."

He lifted up Bradley's pant leg to view the right ankle and asked where are his day splints. I said he doesn't wear day splints. Then I repeated what I had explained to him 3 1/2 years ago, that day splints were not appropriate for him because they do not allow him to compensate and when he had worn them before ( at the age of 9-10, they were making him fall multiple times throughout the day). He then gave me this look and said, "If he fell in day time splints, he will fall if he is walking around in casts." I didn't think to tell him that he didn't have a problem walking in the casts 3 1/2 years ago when serial casting was done....but it should have been in his record. I do remember he didn't like the idea of him walking in the casts when he did it the other time. It is strongly recommended that boys walk in the casts because if the go any length of time w/o walking, they could lose their ability to walk.

He then told me it would be better to put him in a turn buckle hinge AFO to wear at night, one which we could tighten through the night ourselves. At first I thought this might be a good alternative to serial casting. He said, we should try that and down the road he could do tendon release (cutting the heel cords). I'd already heard bad things about tendon release but it wasn't anything that needed much thought for the time being.

He sent me over the Hanger to have him casted for the AFOs. Luckily they were closed but we were told if they were closed to come back after lunch. Well I called my wonderful husband, who is a huge help in decision making. He told me I should call Cincinnati and make sure those type of AFOs were okay. I knew he was right and called the Physical therapist who said right away that they do not recommend those braces. She said the stretching with these AFOs is very intense and not well tolerated with the DMD boys. She gave me the Nurse's phone number so the nurse could get me in touch with Dr.Rybalsky. The nurse also told me, they don't recommend those AFOs.

I waited around until 2:30 in Mt. Vernon waiting to hear what I should do next..we had been there since 9;30. I felt he really hadn't addressed the right ankle. He didn't look at the X-ray CD, he only saw the radiology report. And he didn't base not doing serial casting on the bone abnormalities in the right ankle. It was based on the fact that he didn't think serial casting would be safe. Cincinnnati had already determined he met the criteria, they just needed to clear any further problems it would be for the right ankle. The right ankle to me was really not addressed-I understand there may be nothing that can be done, but I wanted to know why it had these bone abnormalities and I wanted to know if serial casting was appropriate in relation to the right ankle.

The next day after sending Dr. Rybalsky and email and seeking advice on what to do next, she responded asking me if we could come back to Cincinnati to see the Orthopedist on their DMD team. I doubted Tom would want to go that route, which I was right about that. 

A co-worker told me I should call the Orthopedic groups in Cape Girardeau. I explained that we first needed to consult with an Orthopedic regarding his ankle and needed clearance for serial casting. I also explained serial casting and asked if their Orthopedists were able to do serial casting. She checked and came back stating the Orthopedists said it sounded like something they can do.

Of course, I am going to make sure they are actually trained to do and I am going to send the protocol on Serial casting and article about serial casting in DMD. If they can't do it, they may refer Bradley to someone who can. If not, we can go to the Kenny Rogers Childrens Center- where a Physical Therapist is certified to do serial casting.

He will be seeing Dr. Michael Trueblood for the Ortho consult. Please pray that he will be the right person for Bradley and that he will be willing to work together with Cincinnati Children's Neuromuscular team. This is a very important prayer need.

I want the best for Bradley and I believe in being pro-active about his care. I will do whatever it takes to keep him walking as well. I believe God gives us medical staff and treatments that we are to take advantage of. I also believe God led us to Cincinnati for the best care.